A judge has today (Friday 27 March 2020) handed down a decision denying permission for artificial nutrition and hydration to be withdrawn from a 79-year-old man known as AF who suffered a stroke in 2016 - despite family members stating he would not wish to receive life-prolonging treatment in his current circumstances. This follows a three-day trial in the Court of Protection last week, the first to be conducted entirely by video-link.

Prior to his illness, despite AF expressing to multiple family members that he would not want to be kept alive with a quality of life he would deem unacceptable, the former hospital worker had not formally recorded his wishes in a Living Will, also known as an Advance Decision or Advance Directive, or completed any other advance care planning documentation.

During the trial, AF’s daughter, known as SJ, said:

“Working in a hospital for 30 years, he saw sickness and death. Death doesn't scare my Dad. What scared him was loss of dignity. He saw some of the worst situations people can be in… I honestly thought that my Dad had done something about it. He said it so many times, that he didn't want to be kept alive, that I can't believe he didn't write that down.”

Following AF’s stroke in May 2016, there was a dispute between healthcare professionals, independent experts, and family members over whether or not he retained mental capacity to make decisions about his treatment. He began refusing to eat and drink and refusing some medications. Doctors decided to insert a nasogastric tube to provide Clinically Assisted Nutrition and Hydration (CANH) in hospital, although AF repeatedly refused this and attempted to remove it.

A percutaneous endoscopic gastrostomy (PEG) tube was then inserted to provide CANH directly into his stomach. AF again repeatedly expressed that he did not wish to receive this treatment and attempted to prevent food or medication being delivered through it.

Later, AF’s GP believed that continuing CANH was in his best interests. However, his daughter and a consultant in neuro-rehabilitation appointed as an independent expert disagreed.

In the absence of a Living Will, disputes over best interest decisions regarding life-prolonging treatment must be decided in the Court of Protection. This is the case even if the person has appointed a Lasting Power of Attorney for Health and Welfare to make decisions for them.

The Court heard the case over three days last week and today, Friday 27 March 2020, Justice Mostyn handed down a decision denying permission for CANH to be withdrawn.

Responding to the judgment, AF’s daughter, SJ, said:

“There should be posters and information about Living Wills in every doctor's surgery. I am certain that he would have ticked the box refusing artificial feeding if he was in the situation he's in now. We would all have avoided this heartbreak if only the professionals had explained that's what he needed to do.

"If you read the details of this case and think: "Oh my God, I hope that doesn’t happen to me", understand that my Dad lives with that every minute of every day. He would never have said that a few fleeting moments of pleasure in his life could compensate for what he would consider a complete lack of independence and loss of dignity.

"How can all these experts who never met my Dad before his stroke - and some who didn’t even meet him at all - be such experts as to what my Dad would have wanted? They dismissed me, who’s known him all my life, and 11 other members of our family. None of us thought he would want artificial feeding, but our views about what he would want were just dismissed as irrelevant and wrong."

Professor Celia Kitzinger of Cardiff University, who supported SJ in advocating for her father, said:

“In court, the judge said he hoped everyone present had made a Living Will, and even urged a consultant in neuro-rehabilitation who hadn’t to immediately make one following the trial. Everyone with strong views about their future treatment should consider doing the same.

“When considering what treatment they would or wouldn’t want in future, people tend to think about being in a minimally-conscious or vegetative state, but don’t always think about being fully conscious but lacking capacity to make serious medical decisions. Many people are in this situation in the days, weeks or even months before death, as can be the case with dementia. Some people are in this situation for much longer – so far nearly four years in AF’s case. Some people would want to be kept alive in this situation, but others would not. It is vitally important to specify your wishes clearly in a Living Will, whatever they are, with the option to provide further explanation in an Advance Statement.”

Davina Hehir, Director of Policy at Compassion in Dying, said:

“Our thoughts are with this man and with his family, who have experienced not only the heartbreak of seeing a loved one become seriously unwell, but who have also had to endure a distressing court case in an attempt to have his wishes respected.

“This case proves beyond question that recording our wishes for the end of life is absolutely essential, and that having the conversation with our family and friends is simply not enough to ensure our wishes are honoured. Tragically, if AF had made a Living Will, his doctors would have been duty-bound to follow it, but instead he will continue to receive life-prolonging treatment which his daughter and others firmly believe he would not have wanted.

“No one plans to become unwell, but fortunately there are practical steps we can all take now to help ensure our wishes for the future are known and respected. This can include making a Living Will to refuse treatment in certain circumstances; an Advance Statement to record your priorities for care; and a Lasting Power of Attorney for Health and Welfare to appoint a trusted person to make decisions for you if you become unable to. These documents can even be completed from the comfort of your own home, with free, specialist support from Compassion in Dying on info@compassionindying.org.uk or 0800 999 2434.

“In these uncertain times, when death and dying have sadly been thrust into the spotlight, recording your wishes can give you a valuable sense of control and reassurance, give your loved ones a greater understanding of your priorities and concerns for the end of life, and give doctors valuable information which will make difficult decisions easier.”